Saturday, July 26, 2014

Law enforcement officers are first responders for mental illness.Photo by leila haj-hassan, freeimages.com

When your child has a mental illness, too often it’s the policeLast
night, I was abruptly awakened at 4:00 a.m. by the sound of my doorbell
ringing. Confused with sleep, I struggled to pull on a pair of jeans as the
doorbell rang again, followed by an insistent knocking.

“Who is there?” I said as I stumbled to the door.

“The
police,” a firm male voice responded. “Open up please, ma’am.”

My
heart froze. “Where’s my son?” I thought, panicked.

I
slowly opened the door to see two police officers. “Can I help you?” I asked.

“The
door is open,” the male officer said. “Will you check inside and see if
anything is missing?”

My
heart started beating again. It wasn’t anything serious; my son had just
forgotten to close the car door behind him, like he forgets so many things:
dishes on the table, cupboard doors open, sometimes even the refrigerator or
freezer gaping wide, sending my electric bill sky high.

My 14-year
old son has bipolar disorder. For years, he experienced unpredictable, violent
rages. The police have been frequent visitors to our modest suburban townhome. Sometimes
they have taken him to the emergency room. Sometimes they have taken him to
juvenile detention. Every time, my family has been afraid.

This
morning, I read a poignant post on helicopter parenting of adult children with
mental illness—one that I am afraid will be my experience in a few years. Karen
Easter, a Tennessee mom-advocate, wrote this about her
son:

[O]n
bad days, when it is apparent he hasn't been taking his meds, I have no other
choice but to put on my helicopter mom hat.In
fact, I have never liked this hat.Did I
mention I really, really despise hats?Hey,
wait just a minute ... I should NOT have to be wearing this hat AT ALL!But I
wear it because right now this very minute, I must hover to keep him safe--only because the system has failed him and our family miserably. I don’t
really want to wear this hat.

For so
many parents of children with serious mental illness, this last week of August
is a nail-biter as we wait to see whether Congress will do the right thing and
pass Representative Tim Murphy’s proposed “Helping Families in Mental Health
Crisis” Act. Here are some of the critical reforms that Representative Murphy’s bill provides:

Revising HIPAA Laws and Medicaid Reimbursements

Privacy
laws in healthcare prevent parents from getting crucial information that they
need to help their adult children in crisis. And the Medicaid
IMD exclusion has directly caused an acute shortage of inpatient
psychiatric beds for patients with mental illness who need treatment. Today, there are only 40,000
psychiatric beds available in the nation. If my son required longer term care,
he would have to go hours away from my home. This is true for many families.

Providing Alternatives to Institutionalization through AOT

Assisted
Outpatient Treatment (AOT) is a proven alternative to keep people stable and
productive in their communities. The opposition to Rep. Murphy’s bill has
labeled this provision as “forced treatment.” It is not. AOT laws are already
on the books in 44 of 50 states and “require mental
health authorities to provide resources and oversight necessary so that
high-risk individuals with serious mental illness may experience fewer
incidents and can live in a less restrictive alternative to incarceration or
involuntary hospitalization”

A few weeks ago, I spoke
with a young woman who opposed my views on AOT. She had been in a psychiatric
hospital for more than a month and felt that the care she received was “horrible.”

“Have
you been to jail?” I asked. She admitted that like many people who have mental
illness, she had.

“Which
did you prefer?” I asked.

“The
hospital,” she responded without even hesitating. But she made a good point:
our current in-patient hospitalization practices, while not as horrible as the psychiatric
institutions of yore, could still use some serious makeovers in terms of both
physical facilities and therapeutic practices. One of my friends with bipolar
disorder has envisioned a therapeutic hospital that would feel more like a spa,
where people could stabilize in safety while also continuing to work remotely
or go to school—to do the things that give everyone’s life meaning and purpose. Similarly, AOT aims to keep people in their communities, not force them into institutions.

Restructuring SAMHSA funding

I have
already expressed my frustrations with SAMHSA and how they fail to provide assistance to the most critically ill
patients and their families. Representative
Murphy’s bill restores accountability by tying funding to evidence-based
practices that actually help people with mental illness to manage their
conditions and live productive, healthy lives. Far from discouraging
innovation, as the opposition warns, this provision will actually encourage
organizations to build program evaluation into their practice, providing data
about what works—and what doesn’t—so that we can focus on helping people to
make their lives better.

Let me
give you an example from my own state. In an effort to save money, Idaho
contracted with Optum to manage its Medicaid mental health care. Optum looked
at one service, psychosocial rehabilitation, or PSR, and decided that it was
overused and often not medically necessary, especially in children.

PSR had
historically been used as a “catch-all” for children with serious emotional
disturbances or behavioral issues. The result of this abrupt PSR denial was that families suddenly found
themselves without a service they felt was necessary to their children’s
health.

What
did the evidence say? Because there were never any requirements to track
outcomes, the state merely logged hours and made reimbursements. It turns out
that no one really knows what PSR is in Idaho, let alone whether it is
effective. Every agency essentially acted independently, developing their own
model in the absence of standards for care. Two researchers did find significant
clinical improvements for kids on PSR. But they only looked at one of many
models.

Tying
outcomes to funding would have provided much-needed data on whether PSR works
in children. If the data had been positive, we might have an additional
valuable tool to help children function better in the community, a tool we
could share with other communities to improve everyone’s care.

Representative
Murphy’s bill was forged after the tragedy of Newtown, which also sparked my
own desire to advocate for my son. As I researched the myriad problems that
plague our system for my forthcoming book,
I repeatedly found the same tragic story: poverty, mental illness, and prison. America’s
incarceration rates when compared to other so-called first world countries are
quite literally off the charts, with more than 2.4 million people in prison.

If ever
there was a truly bipartisan cause, it’s mental health. Fixing our broken mental
healthcare system promises to ameliorate so many of the other social ills that
harm children, families, and communities. A new advocacy organization,
Treatment Before Tragedy, is sharing stories of families like mine, whose children
are suffering. If you are a family member of someone who has mental illness, I encourage you
to join this organization and to share your story on Twitter, using the hashtag
#Tb4T.

And if
you haven’t, please call your representative personally and ask him or her to cosponsor Representative Murphy’s bill. Right now,
if your child is in mental health crisis, your only options are to call the
police or to go to the emergency room. We can and must do better for our
children and families. No family of a child with mental illness deserves that dreaded knock in the middle of the night.

Thursday, July 24, 2014

On July 24, 1847 (as every young Mormon child knows),
Brigham Young and an advance party of brave pioneers entered the Salt Lake
Valley in what would someday (once the Mormons officially renounced polygamy) become
the state of Utah. “This is the right place,” the prophet declared, evidently
unaware that the California coast was just a few mountain ranges away. The
Mormons, my people, exiled from their homes in Nauvoo, would build a new Zion
in the shadow of the Wasatch Mountains and celebrate every Pioneer Day with
picnics and parades.

This year on Pioneer Day, I sent a two-page letter by certified
mail, return receipt requested, to my Mormon bishop, a man I have never met,
requesting that he remove my name from the church records. Elaborating on a
template I found here, I wrote:

I am
taking this formal step as a direct result of your (not my) church’s decision
to excommunicate Kate Kelly.
A church that cannot allow good women to ask legitimate questions without fear
is not the place for me. I am
aware that according to church doctrine this cancels all blessings, baptisms,
ordinations, promises, covenants, and my hope of exaltation in the Mormon
celestial kingdom, and I have made my decision with that consideration well in
mind. The Mormon version of heaven is not something I could ever look forward
to as a woman. Please
do not have anyone from the church contact me to try to change my mind.

Why now? For years, I lived comfortably in the ambiguous space of
inactivity, accepting welcome plates of brownies, joking that I am now in a
polygamous marriage to my remarried Mormon ex-husband while I have never been
married in the eyes of my new Catholic faith (I had my Mormon marriage
annulled). I never took the formal step of resigning from the church because I
told myself it just didn’t matter that much to me.

The truth is that I left the church a long time ago, first
mentally, as I had to face the growing cognitive dissonance that left me
feeling broken and inadequate, then physically, as I drifted away to things that were more spiritually meaningful to me. As a practicing Mormon, I found that no matter how hard I worked or prayed, I simply
did not feel a reassurance of a loving God. I did not have a testimony that
Joseph Smith was a prophet. And I really didn’t think being Mormon was much
fun. “If this life is all we have,” I thought to myself in 2007, realizing that
I really did believe that, “then I’m wasting it.”

Kate Kelly’s excommunication was the catalyst for me to
finish what I started so many years ago, when I found myself sifting through
the ashes of a refiner’s fire I had never expected—my longed-for temple marriage
broken, my faith destroyed. The reason I stayed active for so many years before
my divorce, judging people who drank coffee, telling myself that a testimony
would be the reward for obedience to rules that made no sense to me, was
because of fear, not love. That fear kept me in the church for several years.

In 1993, I was a junior at Brigham Young University. One of
my favorite professors, Cecilia Konchar Farr, was fired that summer, in part
for supporting a woman’s right to choose. In September of that same year, six
prominent Mormon intellectuals were called before church disciplinary courts
and excommunicated for speaking their minds, for talking about the possibility of a Heavenly Mother, or for telling
the truth about Mormon history. Joanna Brooks has written in excruciating
detail about this experience and how it affected young Mormon feminists in her must-read memoir, The Book of Mormon Girl

I heard the message the LDS Church sent then to women with
doubts like mine. Get with the program, or get out. I stopped writing anything other than ward newsletters. And I got
with the program—marriage, babies, ward callings, temple service, staying home to raise the children—for 13
long years.

I don’t regret the babies (now growing into lovely,
independent people). I do regret all the rest. Like many who have left the
Church, formally or informally, I feel betrayed by my former religion. That
sense of betrayal is likely something that I will struggle with for the rest of
my life.

Still, it’s no easy thing to leave the faith of my fathers.
Like most people born into the Mormon church, I will never really be able to
leave everything about that faith: so much of who I am was shaped by its
culture and customs. And there are some things—the focus on family, the
self-reliance, the way Mormons take care of their own in times of need, and of
course, the music—that I continue to admire.

I am also tremendously grateful for the few church members
who have remained my friends through my faith transition, and for the Kate Kellys of the world who continue to fight from within for what they believe is right. “Do what is right, let the consequence
follow” was one of my favorite hymns when I was a child. I tried then—and I try
now—to follow that advice. It’s just that I no longer believe that there is one
right path for everyone, or that the bright-line path of Mormonism was right for me. The easy answers the church provides are no substitute for the hard questions I now ask myself about meaning and happiness. That's why I am joining other Strangers in Zion this Pioneer Day to declare that the Mormon church is not the right place for us. But that doesn't mean it's not the right place for you. One of my frustrations with the faith is the "us vs. them" mentality born in the persecution of the church's beginnings, the desire to be separate that drove the pioneers to seek safety in the mountain West. But this separateness does not always support the goal of building the Kingdom into a worldwide church.The response of many faithful Mormons to Kate Kelly's personal tragedy was not Christlike by any measure. She was not a money changer in the temple. She is a faithful wife and mother in Zion. As a Mormon who chose to leave, I still remember the excuses I told myself when I watched others slip away. "It must be sin." Or "S(he) is too proud." Or "It's a pity s(he) would give up eternal salvation just because someone offended him/her." Or in the case of someone like Kelly, "What a tragedy that Satan has influenced him/her."Maybe it's none of those things. Maybe people have genuine spiritual experiences that cause them to question their faith. I think most of us have these experiences. Some stay, ultimately finding peace and fulfillment in the Gospel. Others leave, finding peace and fulfillment in something else. But denying the validity of a person's experiences, or whitewashing the truth about your religion's doctrines, is not a good template for sustaining long-term membership in the club.On this day, I celebrate my pioneer ancestors--their courage and faith in giving up one life to seek a better one in the Kingdom of God, "far away in the West." And I celebrate the heritage that gave me the strength to take my own spiritual journey. In the words of that still-dear Mormon pioneer hymn, "Happy day! All is well."

About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).